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Thursday, March 10, 2011

In the middle of all the craziness, we were able to fit in a clinic visit (as if it’s an option).

However, we couldn’t have asked for a better day. Ben did great on the hour and a half ride down, pushed his cars around on the patient table, and waved good bye to everyone as we left.

He is a little over 33 lbs which keeps him above the 90th percentile and is half an inch below 3 feet which is just above the 80th percentile. Of course, with numbers like that I have no room to complain and I did a little happy dance on our way to the room. I can’t take all the credit though, Ben is a physical clone of his father at the same age.

Ben’s lungs sounded crystal clear and he was also able to demonstrate how he can cough on his own for our NP. He is such a stud.

We made a few changes to Ben’s regiment. We upped his enzymes from 3 Creon 12’s to 4 Creon 12’s and if you’re at all familiar with CF or you read this blog, you’ll know the reason why. I don’t need to go into gory details.

We were going to start our second month of Tobi for treatment of his pseudomonas but I decided to switch him to Cayston for the last month. Cayston is a fairly new inhaled med that also treats pseudomonas. If Ben had continued to culture pseudo after our IV treatment of it (August ‘10), he would have been started on Cayston.

I’ve done some research on it the last couple weeks and have heard nothing but positive things so Dr.N agreed that it was a good idea to start. We also did 6 months on/off of Tobi last year and never kicked pseudo so I think it’s time to make a change. We’ll have a couple days break before our new prescription arrives.

Our Greatest Joy

Our first and only child, Ben is 100% pure boy. He loves anything train, truck or car. You can usually find him pushing Thomas on his tracks or running a matchbox car up the sofa. He goes by the name of Ben, Benjamin, Manny, B, Little Man and many more. Ben may have CF but it will never define who he is. It's only a small part of him. He will grow up knowing he can be anything he wants. He is a little boy who is loved by all who meet him.

Our Family

The Author

I am a wife to Ryan and Mom to Benjamin and couldn't be happier. Benjamin was born March 11, 2009. Ben was prenatally diagnosed with Cystic Fibrosis after blood test revealed Ryan and I were carriers. With absolutely no family history of the disease it was a huge shock to us and our friends and family. Despite having surgery at less then 48-hours-old to repair his small intestines, we have been lucky with his health. I created this blog to help keep friends and family up-to-date on what we are doing. My hope is that Ben will look back on it one day and see how much we love him.
Welcome to our life!! It's pretty amazing :)
For more info on Cystic Fibrosis please visit: www.cff.org

What is Cystic Fibrosis?

Cystic Fibrosis is a life threatening, inherited disease, that causes mucus to build up and clog some of the organs in the body. Majorly in the lungs and pancreas. When the mucus clogs the lungs it makes breathing very difficult. The thick mucus also causes bacteria/germs to get trapped in the airways, which causes inflammations and infections that damage the lungs.
The mucus can also block the digestive tract and pancreas. It stops the enzymes from getting into the intestines. The body needs enzymes to break down food, which provides important nutrients to help us grow and stay healthy. People with cystic fibrosis often need to replace these enzymes with capsules they take with their meals and snacks to help digest the food and get the proper nutrition.

How do people get CF?

Cystic Fibrosis is a genetic disease. Which means people inherit it from their parents through genes (or DNA), which also determine a lot of other characteristics including height, hair color and eye color. Genes, found in the nucleus of all the body’s cells, control cell function by serving as the blueprint for the production of proteins.
The defective gene that is responsible for causing cystic fibrosis is on chromosome 7. To have cystic fibrosis, a person must inherit two copies of the defective CF gene.one copy from each parent. If both parents are carriers of the CF gene (i.e., they each have one copy of the defective gene), their child will have a 25% chance of inheriting both defective copies and having cystic fibrosis, a 50% chance of inheriting one defective copy and being a carrier, and a 25% chance of not having CF or carrying the gene.

What is the life expectancy for people who have CF?

There is no way to accurately predict how long people with cystic fibrosis will live, as many different factors may affect a persons health. Severity of disease and time of diagnosis are two such factors. Many people have a mild case of CF, while others can have moderate or severe cases. In addition, some adults with cystic fibrosis have only recently begun to use new treatments, while an infant diagnosed at birth will have the advantages of starting specialized treatments that were not available even a decade ago. Improved treatment and management of Cystic Fibrosis now results in a much longer life expectancy. Since the 1960’s, average life expectancy has risen from 5 up to just over 37 years